At its worst, MS can cause severe disability, and in some cases people with MS do have to use a wheelchair in order to improve their mobility.
How many people are affected?
MS affects more than one million people world-wide and about 85,000 in the UK. It can strike at any time of life but most people are diagnosed in their early twenties or thirties.
About twice as many women as men are diagnosed with MS. It is more common in temperate climates and the incidence decreases closer to the equator. Interestingly, Scotland has the highest prevalence of multiple sclerosis in the world (ref: Swingler RJ, Compston DAS. J Neurol Neurosurg Psychiatry 1986; 49: 1115-24 and Sutherland JM. Brain 1956; 79: 635-54).
The prevalence rates reported in Orkney and Shetland are about double the highest rates reported in other parts of northern Europe. This may be due to genetic susceptibility or to the unusual pattern of environmental exposures, particularly infections, in small sparsely populated island communities.
The symptoms of MS
Because MS is a disease of the CNS, it can affect any part of the body, resulting in a range of symptoms some or all of which are experienced by people with MS. The most common symptoms are:
- Loss of sight in one eye, double or blurred vision
- Spasticity or tremors
- Bladder and bowel problems
- Poor co-ordination.
- Weakness and fatigue
- Tingling, 'pins and needles', numbness, itching and pain
Causes of MS
The cause of MS is not known, although it appears that for some reason, the body's immune system begins to attack and damage tissues. It has been suggested that a virus may act as a trigger for MS in some people.
The progression of MS
MS is a very unpredictable condition. No two people experience the same symptoms to the same degree and it is difficult to predict the course of the condition in individuals. About two thirds of MS people with MS have 'relapsing/remitting MS', with, on average, a relapse (or attack, or exacerbation) occurring once or twice every year.
Relapses vary but generally they take the form of a sudden worsening of symptoms lasting from a few days to a few months. Often there is good or even complete recovery after a relapse and the disease is said to be in remission. Many people with relapsing/remitting MS will go on to develop a more progressive form of the condition (secondary progressive MS) and this occurs on average about 15 years after onset.
A small proportion of people have a rapidly progressive form from the start of the disease, often referred to as primary progressive MS. In the progressive phase, there can still be relapses and remissions although recovery is often incomplete. Disability usually develops slowly.
About 10% of people with MS have a benign form of the disease with only occasional relapses and good recovery and never have significant disability.
MS does not significantly affect life expectancy.
Diagnosis
Diagnosis of MS can be difficult since it is such a complex disease with fluctuating symptoms. There are no tests which are specific to MS or 100% conclusive. Certain diagnosis depends on the identification of at least two separate areas of damage in the central nervous system.
In the past, this diagnosis was made largely on the basis of a clinical history and diagnosis could be a lengthy process, but increasingly brain scans are used to confirm the diagnosis. Magnetic resonance imaging (MRI) scans can accurately detect areas of damage within the brain and spine and have increased the speed of diagnosis for many people with MS.
Nerve tests called 'evoked potentials' are sometimes used to test vision, hearing or sensation and can also help to detect areas of nerve damage. In the past, lumbar puncture tests were frequently used as a means of testing for MS but their use is becoming less widespread.
Treatment options
There is no known cure for MS but significant advances have been made in the development of new drug therapies over the last five years and can now offer real benefits to people with MS.
The treatments available fall into three main categories:
- Those which are used to manage specific symptoms
- Steroids, which are often used to reduce the length or severity of a relapse
- New classes of drugs, such as beta interferon, which have an impact on the disease process itself.
Management of symptoms
Bladder and bowel problems can usually be improved by a variety of medications or occasionally by surgery. Specific aids and appliances, such as catheters can also be helpful in some cases. People with MS with severe or complex problems may need to be referred to a specialist nurse continence advisor.
Eye problems such as double vision can often be improved by the use of steroids, eye patches or special glasses.
Fatigue is a common symptom that can often be managed with techniques such as time management and energy conservation. Specially designed exercise programmes can help to increase energy levels.
Pain is now recognised as a symptom of MS. Neurological pain (parasthesia) can occur as a direct result of MS lesions, in which case it can be treated by conventional pain killers or in some cases, antidepressants, which can alter the interpretation of pain messages.
Physiotherapy and occupational therapy can help to relieve joint and muscle pain associated with bad posture, awkward positioning and immobility, as can massage and ultrasound treatment.
Spasm and spasticity can lead to stiff or even rigid limbs and restricted movements. Physiotherapy can often prevent or relieve spasms and drugs such as baclofen, dantrium and more recently, tizanidine, can also be used to relieve these symptoms.
The role of steroids in the management of MS
Steroids (corticosteroids) are the standard treatment for a relapse or exacerbation of MS. Corticosteroids are produced naturally by the body's adrenal gland to reduce inflammation but studies have shown that an additional 'boost' of steroids can help to speed up recovery from a relapse. They can be given in high doses either by tablet or as an injection. Treatment is usually restricted to a few days.
The role of disease modifying drug therapies
Beta Interferons
Interferons are chemical substances which occur naturally in the body and play a vital role as messengers in the immune system. Beta interferon is known as a disease modifying drug, in that it is the first to have an effect on the underlying disease process, affecting the whole course of the disease, rather than just managing specific symptoms.
Beta interferon is not a cure for MS but it is able to reduce the number and severity of relapses, slow the progression of disability and reduce the amount of scarring or lesions in the brain.
There are three different kinds of beta interferon available: Betaferon (interferon beta 1b), Avonex and Rebif (both beta interferon 1a). All are administered by injection, either beneath the skin or into the muscle. Initially, beta interferon was licensed for relapsing remitting MS but it can now also be prescribed for people with secondary progressive MS. Government guidelines recommend that beta interferon should only be prescribed by a neurologist.
Treatment with beta interferon is expensive (approximately £10,000 per person per year) and availability varies across the country because of differences in funding policy among health authorities, which can make it difficult for people with MS in some parts of the country to have access to the treatment. The National Institute for Clinical Excellence (NICE) is considering the clinical and cost-effectiveness of beta interferon and glatiramer (see next section) with a view to producing national guidelines as to their use.
Glatiramer Acetate (formerly known as Co-polymer 1)
Glatiramer Acetate is licensed in the US but not the UK. It is a substance which resembles the myelin protein surrounding nerve fibres. It is thought to work by mimicking and suppressing the destructive immune response against myelin and promoting immune tolerance. As with beta interferon, the drug has been shown to reduce the number of relapses and slow the progression of disability for people with relapsing remitting MS.
Complementary therapies and MS
Many people with MS turn to complementary therapies such as acupuncture, homoepathy, yoga, massage and use of evening primrose oil in an attempt to manage their condition more effectively. There is very little clinical evidence to demonstrate which, if any, therapies are beneficial but many people with MS who try such therapies report relief from symptoms and a general feeling of wellbeing.
People with MS wishing to try a form of complementary therapy would be well advised to discuss the issue with their GP. It is also important to check that practitioners are adequately qualified and experienced.
Cannabis and MS
Some studies have shown that oral or inhaled cannabis can have a positive effect on reducing spasticity, muscle spasm, tremor, pain and fatigue and research has now begun to assess its effectiveness in the treatment of spasticity due to MS. At present, cannabis is illegal in the UK and cannot be prescribed. A cannabis-related drug called nabilone or dronabinol, is prescribable for nausea and vomiting associated with cancer therapy, but not for MS.
Hyperbaric Oxygen Therapy
Hyperbaric oxygen therapy usually involves sitting in a pressurised chamber similar to a diving bell and breathing oxygen at increased pressure through a mask. Most chambers seat 4-8 people, though single person chambers are also available. The treatment regimes vary slightly but normally consist of an initial course of around 20 treatments, each lasting about one hour, spread over a month. Following this initial intensive course, top-up sessions are usually recommended. Many people who under go this form of therapy report improvement in symptoms, notably bladder control and a lessening of fatigue.
The on-going management of MS?
Because of the potential variety of symptoms of MS, many different health professionals may have a useful role in helping people to manage their MS, including neurologists, GPs, nurses, physiotherapists, occupational therapists, counsellors, continence advisers, neuropsychologists, speech and language therapists and dietitians.
In some areas of the UK, people with MS have access to such a multi-disciplinary team, often with a nurse or 'key worker'. The MS specialist nurse provides a pivotal role in co-ordinating the activities of all health professionals involved in the care of people with MS.
Nurses comprise 60% of the NHS workforce and deliver the majority of care. Nurses have much to contribute to the management of MS, whether they work in the community, in hospital or across both areas as a nurse specialist. The MS Research Trust believes that everyone diagnosed with MS should have access to an MS Specialist Nurse in the same way that Macmillan Nurses are available to people with cancer.
We are indebted to the MS Trust for their help in compiling this section.
